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Waiting for treatment options

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

Many of you will relate to this. I am waiting for my daughter to pick me up to go to my oncology appt. to discuss the treatment options. We are well prepared as son emailed questions to her last week so she will know what we need to learn. Nevertheless, my stomach is upset and my BP is rising as it always does for these appts. What makes it extra hard is I feel fine and have absolutely no symptoms. My legs are so much better after all the lymphedema massages, so it is like being forced to take a step closer to the fire when one is not cold! So, will add more tonight or tomorrow. But needed to do something to keep me occupied while I await my ride. I am so thankful for this group as you allow me/us to honestly express the truth. I try to be cool on the outside but my knees are knocking. Hugs, DF

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2803
Joined: Mar 2013

Sending you PEACEFUL thoughts my friend. Try to take a breath and know we are with you in spirit.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1688
Joined: Jun 2015

Looking forward to hearing from you tonight or when you can Donna Faye. I have white coat hypertension and understand exactly what you are going through. I hope you were able to get clarity with your questions and are able to make a decision on next steps. 

Love and Hugs

Cindi

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

Wonderful 2-hour meeting with the medical team. Thank heaven my daughter was there to take in what I missed. The good news is I have up to 6 weeks to decide but believe will do before then. The vaginectomy does not sound like the best choice as she believes either the rectum or bladder or both could be damaged and would be living with a bag or two! At 80, I am going to have to mull that over.  The hormonal therapy does not work well on UPSC. She is very much interested in the lenvatinib/pembro immunotherapy.The side effects can be toxic but the results for those who tolerate it well are promising. I think that may be what I choose to do. I have sold my home and should close by March 1 and be settled into my son's home where we have a lady to help me should I be puny. There is the possibility of cleaning the V out once again like in Oct., but because of all the rads, the V is getting very scared and bleeding can be serious. I am now at home and the BP is down and the knees are not knocking. I know my time is getting short on this earth, but I am not sad as life has been 89.9% excellent! My major concern is that I not be a burden to anyone, but my kids all say it is their time to scare the monsters away. I have been greatly loved and will decide on what seems to offer all of us the best QOL. I hope my choice and my reporting to you on how things go will be helpful to others who join us on this lonesome road. Until next report, I remain at peace. df

Molly110
Posts: 150
Joined: Oct 2019

Wow! You have raised some wonderful children. I love what they said about their time to scare the monsters away. 

 

I hope there are no monsters, but if they do show up, I'm glad you have your own monster slayers.

 

Molly

BluebirdOne's picture
BluebirdOne
Posts: 360
Joined: Jul 2018

as you make your decision. You and your family and friends have researched the hell out of this, had your two hour consultation (!) and now you are as equipped as well as you can be to make your decision. Grace under pressure. Thanks for keeping us informed. I am rooting for you no matter what. 

 

Denise

Fridays Child
Posts: 185
Joined: Jul 2019

It's a hard call to make but I know you have considered all aspects and will make a good decision.  Best wishes to you and thanks for keeping us posted. 

Edit to say, for what it's worth, when they were discussing the potential side effects of the pembro/levatinib combination, they said that the sponsor had told them that severe side effects "were not typical" in the study.

Armywife's picture
Armywife
Posts: 430
Joined: Feb 2018

We love you so much, DF.  I'm glad you have such a thorough team, in life and medically.  What a blessing!  

MAbound
Posts: 1087
Joined: Jun 2016

Bravery is defined by doing what you have to do even when you are scared. You have been the epitome of brave through all of this even though you had looked into ending things on your own terms. I could understand that, but really didn't want you to go that way.

You sharing your thoughts and feelings has been a gift to us all.  Whatever happens, allowing your children to be there for you like you have been there for them will always be the best gift you could ever give them. 

 

jan9wils's picture
jan9wils
Posts: 128
Joined: Mar 2017

I am glad your meeting provided some good information for you are feeling the peace you deserve. 

Tamlen's picture
Tamlen
Posts: 264
Joined: Jan 2018

Donna, it's a testament to you that you have such wonderful children -- I so fell in love with their comment that it's their turn to scare the monsters away. How awesome is that.

You've done a great service to all of us by sharing your path through this next phase, your ups and downs, what you've considered and learned. Big hug to you as you decide how to proceed.

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

Tamlen, when you are feeling very brave, go to you tube and get James Blunt singing Monsters. My daughter and I watched it together and we both wept and hugged but it is such a tribute to parents and their children when they can share this time. That's where we got the phrase.  I am so blessed with these wonderful adults who will always be my babes.

Tamlen's picture
Tamlen
Posts: 264
Joined: Jan 2018

Also made my husband, who lost his father years and years ago, break down and weep. Thanks for sharing this, Donna. What a moving song and video.

CheeseQueen57's picture
CheeseQueen57
Posts: 936
Joined: Feb 2016

Prayers too!  So strong! But of course we have no choice, do we?

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

Feeling stronger this morning as I read all your comments and know you DO understand as we make choices as CQ said - "we have no choice" but to choose. I have never had to make such a difficult choice except when I asked for a divorce.  That was 25 years ago, but like now, I did not rush as I knew it was a life-changing choice. I need to decide what I can live with w/o too much anger as I do not do sick or puny well. I wrote a letter to my oncologist for yesterday's meeting and just shared my life with her. It was a great move as we probably connected better than we ever have as she too was a cowgirl in her youth in Montana.  She opened up about understanding now why I need to choose a treatment that will not make me hang up my boots. I always believed in the power of the written word. We high fived and said Ya Hoo!

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

I can so relate to that divorce decison taking so long.  I was in a bad marriage for many years, but even when I knew I didn't want it anymore, it took me two years to work up the courage to change my life and leave.  I saw a therapist during that time, and she always said, "When you come to terms with how you want to live from now until death, you will know what you need to do."  Once I got through that hurdle, what a relief.  I moved out, got a beautiful apartment, got a better job, and better relationships with my friends, and within a few years I was dating.  And then I met my current husband, who is such a blessing in my life.  I can't even imagine having been married to anyone else.

This cancer thing is SO different. While I know that I technically have choices, choosing to let the cancer "win" just doesn't ever seem like the right choice.  And even if our cancer is slow-growing, I wanted it gone ASAP.  What is so unsettling is not knowing if it is really, really gone.  Its kind of like wondering if your ex-husband is actually still living in the walls of your home.  Ugh.

I am starting 5 rounds of brachy in March... scared out of my mind, but I don't feel like any other choice is the right choice.

 

 

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

I've had 8 - 4 once and then 4 more. My rads doc is fantastic so the treatment was not hard at all. 25 pelvic as well and again, just some bladder and bowel upset but settled down in a few months. Easier than a divorce for sureInnocent You'll be fine!

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

Easier than divorce... haha. Been there.  

I am so worried because I am still experiencing pelvic floor symptoms, even 5 weeks post-Davinci.  It seems I am alone with this difficulty, and it concerns me that brachy may be harder for me too.

Molly110
Posts: 150
Joined: Oct 2019

Oops, Jill Andrea. I answered your first email before I saw your second one. I wasn't discounting your expereince. 

 

I hope it goes as smooth as silk for you.

 

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

No worries Molly!  Smile

Molly110
Posts: 150
Joined: Oct 2019

Jill Andrea, everyone's experience is different, of course, by VBT was a snap for me. I was terrified and almost didn't do it. It started off with a bad experiene -- I had to go downtown as the health system I use has only one of the VBT machines. It was a whole new set of people from my local team, and one of them was the only insensitive person I've come  across among the hundreds of health care providers and system employees I've dealt with in the six months since my diagnosis. I was clearly scared about the process of being fitted, and when it was over, she said in a snarky way "there, we are through torturing you." I was so angry that I came close to telling her to shut up unless she was willing to take off her clothes and have a dozen people stand around while she underwent a fitting. Since I suffer from what a friend calls terminal middle class politeness, I did no such thing, but I was frank when asked to review my experience. Fortunately, the woman in question was part of the physics (if that's the right term) end of the VBT. so I never saw her again. My radiologist, resident, nurses, and techs were all amazingly kind and gentle. I had five sessions, and breezed through them. There was no pain or even discomfort, and each session took just minutes. I ended up loving every single person on that team. I had no side effects and no scarring at the one month check up. I am using a vaginal dilator to help make sure that I don't develop any scarring, as my gyn/onc says it can develop later if one doesn't do the vaginal dilation (sex works for vaginal dilation, but it has to be every day). Your medical team may have different advice, of course, but I wanted to share my very recent experience, as I was scared that I would end up burned and scarred inside with a non-functioning vagina, and I didn't know who to ask about it.

 

JillAndrea's picture
JillAndrea
Posts: 30
Joined: Jan 2020

Thanks Molly,

Where I live, all the doctors are part of the same health system.  My gyn-concologist referred me to the radiation oncologist, but their offices are in the same hospital so I go to the same building.  I already met with the radiation oncologist for a consultation - he was very nice, and all of the staff seemed very warm and friendly.  I feel very fortunate in that regard.

Molly110
Posts: 150
Joined: Oct 2019

That sounds like the perfect set up. My doctors are part of the same system, but I got my chemo and chemo related care in the northern suburb where I live, just minutes from home and work. They have regular radiation at my local hospital, but there is one only of the VBT machines in the system since it costs tons of money, so I had to go into the city for that. Because it was all within the same system, my gyn/onc and radiation doctor did weekly conferences on their patients. This has been my first serious ilness or condition, so I haven't had much interaction with the health care system. I feel supremely blessed to have been referred to this system. 

I'm so glad that you found someone with your same side effect from the hysterectomy. That must be such a relief.

Fridays Child
Posts: 185
Joined: Jul 2019

Love the comment about choosing a treatment that won't make you hang up your boots! 

barnyardgal
Posts: 263
Joined: Oct 2017

Thinking of you as you ponder your treatment options. Your dr sounds grest and I'm glad you have such a wonderful, supportive family!

MoeKay
Posts: 293
Joined: Feb 2004

Hi Donna Faye, I want to wish you all the best as you decide on which treatment option to pursue.  It sounds like you have fantastic family and medical support systems, which will be invaluable in reaching a final decision with which you will be most comfortable and at peace. 

I remember a social worker who facilitated a cancer support group I attended many years ago saying that people deal with cancer the same way the have dealt with all other major life challenges.  I sense that you've been a wise decision-maker throughout your life and that this decision will be no exception. 

 

EZLiving66's picture
EZLiving66
Posts: 1436
Joined: Oct 2015

Donna, I read your posts with tears in my eyes. I have envisioned your path to be mine someday and I hope I can handle it with your grace and dignity. Life is so fragile and so precious but the quality is so important too. All my best to you and your lovely family!

Love,

Eldri

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

I updated my picture so you could see my army! That was a couple of years ago at Faye's Frolics which we try to have once a year. As I ponder my future, I wanted to share something. This speaks to me because I have always tried to control everything to avoid disaster. Sometimes, things fall apart no matter how hard you try to avoid it. Now I must learn to be comfortable with uncertainty. " A warrior accepts that we can never know what will happenen to us next.We can try to control the uncontrollable by looking for security and predictability, always hoping to be comfortable and safe. But the truth is that we can never avoid uncertainity. This not knowing is part of the adventure. It is also what makes us afraid. Learning to live with uncertainty is how we learn to relax in the midst of chaos. How to be cool when the ground beneath us suddenly disappears." Pema Chodron

MAbound
Posts: 1087
Joined: Jun 2016

I'm always accused of being a worrier rather than a warrior, but have rather considered myself as being "pro-active" trying to prevent the possibles before they happen. Doesn't always work, but I feel better for being prepared. I'm not sure I could easily let go of that part of my personality, either, but I sure am always going to remember this post! Thank you so much Donna Faye, you are a treasure!

Fridays Child
Posts: 185
Joined: Jul 2019

This quote is very meaningful to me.  I, too, am one to make plans for various potential situations.  I like to know what's going on.  But every three months there's going to be another scan and there may be situations in between that lead to other questions and uncertainties.  And somehow I need to learn to live with that instead of worrying about it.

Forherself's picture
Forherself
Posts: 438
Joined: Jan 2019

and sending warm support to. you while you make your decisions.  I find that is such a hard part of this disease.  There is nothing cleaar cut.  You have defined your goals and now can choose the most likely path to get you there.   Hugs

I love your new picture.  On your page you can post pictures under the heading expressions.  

zsazsa1
Posts: 504
Joined: Oct 2018

Donna, you are an inspiration.  I'm hoping for you that the proposed chemo regimen gives you more time with your wonderful army.

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

Bear with me, an old English teacher, as I define this word dilemma! A situation in which a difficult choice has to be made between 2 or more alternatives! This is not an easy place to be as I wonder which horn to choose or should I just run between them? I now know how the matador feels in the moment of truth.

It is down to surgery or the keytruda/lenvinta therapy. My son and daughter have asked oncologists in their circle to chime in. I would like my doctor to tell me what she would do, but she seems reluctant to do that and I understand, but it would sure make this decision easier. She says she cannot tell me what she might discover until she goes in surgically, and some of the might be's are scary. Sloan Kettering is big on the K/L treatment and I can always stop if side effects get too bad. I may just have to flip a coin if one treatment does not offer more pros than cons. Sorry to drag all of you along with me, but this UPSC is a real devil and I just happen to be an oddball case!! Good news is I have sold my home and closing is 26 Feb. I will be all settled in my son's home when I begin treatment. I have enough $ from the sale to cover end of life care and that is a biggie for me. I must make a choice by March 10 when I meet again with my oncologist but we are starting the scans, etc. in the next weeks to see if cancer is hiding anywhere else. That will also make the choice easier. Thanks for your continued support.  df

 

 

Armywife's picture
Armywife
Posts: 430
Joined: Feb 2018

Another thing we have in common!  I was an English teacher, too.  (Also went through a painful divorce 14 years ago.)

My two cents:  I'm praying for great wisdom and discernment for you.  I do remember that for me, the worst part of any decision is actually agonizing through and making it - implementing the decision is easier after all that uncertainty about what to do is over.  

I will add that when I was first diagnosed, my college roommate put me in touch with her daughter, who is a PhD geneticist.  laura did part of her training at MD Anderson.  She was the one who told me to get genetic/genomic testing, and she was very excited about the fact that I was MSI-H, because she said Keytruda was an absolutely amazing drug that had been fast-tracked because its efficacy was off the charts. (At that time it was only approved for MSI-H.) I plan to ask for it if I recur, although I have not explored the side effects because I'm trying not to have too much in my head to worry about right now.

Much, much love to you, dear sister.  You have a wonderful tribe and you deserve every blessing.  So thankful for you.

MAbound
Posts: 1087
Joined: Jun 2016

I'm calling to mind Lou Ann's and Der Maus's experience with immunotherapy and thought one of the issues with it is that in time it could lose it's effectiveness? But Jimmy Carter is still going and living a good life at 95. Has that possiblity been discussed and is there any discussion on how long you might get from it? You're age by itself is a big factor on how well you'd tolerate a major surgery or it's aftermath, but the risk might be worth it if you can be cured, especially with the support you are going to have to get through it. If that outcome would still be a coin toss, I'll go out on a limb for you and say that I think I'd chose the immunotherapy. Those scary potential side effects might be like they are when we hear about them for chemo. Possibles but not certainties. Hope that helps you.

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

I, too, think of der Maus but she was just on the Keytruda. This combo is very new but is showing great promise. However, you are right, it does lose effectiveness after a time. The complications with surgery do concern me. I emailed my oncologist today with more questions re the surgery and she will call me in the AM. I am leaning toward the immo option for many reasons. I liked your reference to Carter. We grew up just 45 miles apart in south Georgia. Maybe some of that peanut diet will keep me as strong as he!

 

Molly110
Posts: 150
Joined: Oct 2019

I loved your careful definition of "dilemma," Donna Faye. I apologize if you have answered this elsewhere and I missed it, but is it possible to start with the drugs and if you have bad side effects switch to the surgery? Chemo was so easy for me except for the neuropathy, which seems to be still getting worse, which is expected since I am only 3.5 weeks past my last chemo, and the severity of the neuropathy is cumulative. However, my gyn/onc has plenty of women who go through the same chemo with no neuropathy at all. So, as you know from your own experience,  there's no way to know how your body will react to the chemo.

 

You sound like an amazing woman, with an amazing tribe. I hope the right choice becomes peacefully clear to you when it's time to make the decision.

zsazsa1
Posts: 504
Joined: Oct 2018

Another consideration is your general health, whether you would be able to even tolerate the surgery.  The surgery sounds horrible, but the fact is, you'd probably come through it just fine.  And the immunotherapy could be kept in reserve for the future (and as we've all seen, there are new treatments coming out on a pretty frequent basis these days).

Donna Faye's picture
Donna Faye
Posts: 420
Joined: Jan 2017

You are all verbalizing my thoughts. I will be fine once the decision is made as you said, Army wife. Today when I talk to the doc I will have better answers to the surgery downsides. And it is possible to start the immno first but not sure will feel up to surgery if bad side effects. Also, I am on blood thinners and doc is afraid if I wait too long to start treatment may get some serious bleeding. I try and take a mind break every day - a longer walk with the dog, lunch with a friend, etc. but I wake up and the first thought in the morning is What should I do? I have had extensive genetic testing and have nothing to base on there. However, for an 80 year old, I am in pretty good shape so with a few more decision days, I will decide. It helps to write my thoughts and to hear yours. Thank you.

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